Alaska

Alaska – a place of glaciers, snow-topped mountains and polar bears. And a place where virtually all children in foster care are on psychiatric medication. I learnt this fact from Alaska-based Jim Gottstein at his presentation at the NARPA conference back in September. Jim Gottstein, a lawyer and founder of the Law Project for Psychiatric Rights (http://psychrights.org/index.htm), is involved in taking legal action to try and reduce the amount of psychiatric medication prescribed for children.

I have been visiting the Soteria House in Alaska. The original Soteria House was set up in the 1970’s by psychiatrist Loren Mosher as an alternative to psychiatric hospital for people having a first experience of psychosis. One of the key aspects of the original Soteria House was that they viewed psychosis as a personal crisis rather than a disease, and used minimal, or no, medication. Instead the staff supported people through their crisis by a process of ‘being with’ the person.  For more information see: http://www.moshersoteria.com/ and http://www.soterianetwork.org.uk/

The Soteria House in Alaska has stayed true to this spirit. Personal relationships remain the primary intervention. I enjoyed visiting the Soteria House and finding out more about the organisation and how it came to be set up.

Service User or Peer Specialist?

I recently arrived into Alaska by ferry – the 3 night journey gave me plenty of time to reflect on my trip so far. As mentioned in my last blog entry, the term used in the USA to describe people with lived experience of mental health issues is ‘peer’ rather than service user. The word peer is used to represent the relationship peer-to-peer, a meeting of equals.

The peer movement in the USA has created a new profession – Peer Specialists – people who have personal experience of mental health issues and undertake training to use their experiences to help others. This profession feels different from, and more powerful than, service user involvement worker roles in the UK.

Peer Specialists support people experiencing emotional and psychological distress and provide advocacy. One of the approaches Peer Specialists use is Intentional Peer Support (http://www.intentionalpeersupport.org) – most of the crisis houses I have visited in the USA use this approach. During my travels, I have sat in some classes as part of Peer Specialist training courses, and learnt about the values and skills of this profession. One of the unique aspects of the profession is ‘intentional disclosure’ – a particular way of sharing personal experiences to support and give hope to others.

Peer Specialists are employed by a range of agencies and organisations – some work in mental health teams alongside psychiatrists, social workers and other professional groups; others opt to work in peer run organisations. There are opportunities for career development and ‘moving up the ladder’ within the profession of Peer Specialist – I have come across many directors of peer-run organisations.

Vermont: 28 Sept -3rd October

I had chosen a good time to visit Vermont – the leaves on the trees were changing colour, creating spectacular scenery. What was even better than the scenery was the sense of community I experienced among the people I met in Vermont.

Several people told me the story of Hurricane Irene. Two years ago, Hurricane Irene came to Vermont and caused great destruction. For several days part of Vermont was flooded, without power, and cut off from the rest of the state. The restaurants in this area decided rather than throw away the food they could no longer refrigerate, they would cook everything they had and provide free meals to people in the community. The hurricane also destroyed the state psychiatric hospital and the patients had to be evacuated. But with the destruction of the old hospital came the opportunity for creating something new. The money that was spent on the old hospital was freed up to make a new smaller hospital, and the substantial surplus was invested in ‘peer-run’ community mental health projects and services.

‘Peer’ is the term used in the USA to describe people who have personal experience of mental health issues, people who in the UK may be referred to as mental health service users. I visited several peer run support projects and services in Vermont including the Wellness Co-op (http://www.thewellnesscoop.org/), Another Way (http://www.anotherwayvt.org/) and Alyssum (http://www.alyssum.org/)

In the UK, one of the recent fashions in mental health, and health services in general, is ‘service user involvement’ i.e. if a new mental health service is going to be developed, the perspectives of people who are going to use that service should be sought, and incorporated into the new service. This is good in theory, but the process can be tokenistic and ‘service users’ views’ are not always listened to or acted upon. In contrast, in the places I’ve visited in the USA, the focus is not on service user involvement but service user control.  People with personal experience of receiving mental health services are designing, setting up, and receiving funding for, the kinds of services they want, rather than just being consulted about services that professionals think they should have. 

Hartford, Connecticut: 26-28th September

All successful social change movements in the United States have contained three groups of people: activists, whose own experiences of oppression make them passionate about bringing about social change; lawyers, who use the law to make society respect people’s rights; and storytellers, who carry the meaning of the social movement to the wider population.

These were the opening remarks of John Jones, president of the National Association for Rights Protection and Advocacy (NARPA) to their annual conference (www.narpa.org), which this year was held in Hartford. Mr Jones encouraged us to think about these three groups of people in terms of the social movement to increase the rights, and power status, of people who have psychiatric diagnoses.

New York: 15 – 26th September

One thing that has really struck me about the USA is the amount of homeless people sleeping on the streets. I have seen this in all the places I have visited so far. When I was sightseeing in Boston I saw a man sitting at a bench with all his possessions in a shopping trolley next to him. A short while later I saw another man searching through a rubbish bin taking out items – the last time I had seen someone do this was when I was visiting China. Another image I remember is of a homeless young woman with all her possessions, including a bag of stuffed toys, next to her on the pavement. This is not what I expected in a ‘world leader’ country.

My first meeting in New York was with Sascha DuBrul, one of the co-founders of the Icarus Project (http://www.theicarusproject.net/). The Icarus Project is about creating a new language and culture to talk about experiences sometimes referred to as mental illness. They view madness as a ‘dangerous gift’, rather than as a disease or disorder, and have a focus on providing hope and overcoming alienation. Later in the week, I sat in a sunny park and discussed Campus Icarus (a project to bring the ideas of the Icarus Project to the university campus and students) with Brad Lewis, a psychiatrist and academic at New York University. We discussed the similarities between Campus Icarus and the Critical and Creative Approaches to Mental Health Practice Group in Lancaster (www.ccramhp.org.uk) and considered what the Lancaster group could learn from the US experience.

While in New York I also met up with people from Parachute NYC – a New York City run programme to create alternatives to hospital for people experiencing psychiatric or emotional crisis (http://www.nyc.gov/html/doh/html/mental/parachute.shtml) Parachute NYC will consist of mobile crisis teams that visit people at home and provide Needs Adapted Treatment (similar to Open Dialogue) with the person in crisis and their family, and crisis houses where people can stay as an alternative to hospital.  It was interesting to see the similarities and differences between the Parachute NYC crisis house and Afiya that I had visited in Massachusetts.